Patient Social Networks

In the past when people had a problem they used to seek support and advice from family and friends. Today they turn to the internet. Some might say that the two are exact opposite of each other but what the internet lacks in it its warmth and personal contact, it can often make up by being less judgemental and more anonymous.  A survey conducted by Opinion Research Corporation reveals that 34% of people who search health information use social media resources, online forums and message boards. According to Pew Research Center one in five adult Internet users suffering from a chronic condition such as high blood pressure, diabetes, heart or lung condition and cancer goes online to find others with similar health concerns. Our own estimates suggest that the word Patient social networking applications vary from maintaining health and wellness, disease management, treatment and personal health records, to physician and hospital selection, and clinical trial recruitment.Patient networks are driving transformation change in how health information is accessed and shared, and how healthcare organizations interact with patients and leverage information.

Social networks connect patients, supporters, survivors, and caregivers, benefiting patients in a number of ways. They provide emotional support, encouragement, camaraderie and a vast amount of information and practical advice, especially to patients who cannot leave their homes and to patients with chronic and rare conditions. They satisfy patient’s need to find out how common or unique their experience is. They also add significant value to what is sometimes missing in a standard healthcare systems and in a typical 8-minute doctor’s appointment. Social networks are not there to replace doctors, however, they are best for answering questions that people consider too insignificant to ask their health professional and also help overcome the information inequality that exists between patients and physicians. The power of social influence within social networks can also drive behavioural change and foster healthy living, according to Barbara Ficarra. The combination of a supportive community of patients, family and friends, and the availability of experts advice can inspire and motivate people to better manage chronic conditions, improve health literacy and efficacy, and as a result overall health and wellness.

There is a vast amount of patient-directed sites. Established in 1994, MedHelp today has over 12 million visitors monthly and claims to be the world’s largest health community with the largest databases of self-reported medical data. MedHelp helps patients find answers to health questions and offers condition-specific applications and Personal Health Records for tracking symptoms and treatments. Founded in 2004, PatientsLikeMe already has 116,080 members and over 500 conditions globally; the website provides a platform for patients to share real-world health experiences, track disease progress, access information, and share findings with health professionals and industry organizations. CureTogether compares the real-world performance of millions of treatments across 590 health conditions; patients from around the world share quantitative data anonymously, talk about sensitive symptoms and compare treatment options. Vitals provides comprehensive medical information on 720,000 doctors across the US; over 4 million visitors per month use it to find and connect with doctors. DailyStrength is a social networking site with over 500 communities that enables patients to exchange experiences and treatments, discuss daily struggles and successes, and receive emotional support. FacetoFace Health is an online health network that connects individuals with similar diagnoses via its HealthMatch engine. To see the value of these platforms it is important to recognise that as in most other things online, the unique nature of interaction creates a unique experience. The differences between the traditional and online sources only enriches the information landscape.

There are a number of patient network specifically for cancer patients, including I had cancer, Know Cancer, Planet Cancer, Stupid Cancer, and Association of Cancer Online Resources. Similarly, a number of social sites target diabetes patients only. Examples include Diabetic Connect, Diabetic Rockstar and many others. Another specialist networking site is Disaboom, a platform for disabled patients.

Currently under clinical trial, social network Wellaho will soon be available for prescription to patients. In addition to standard social networking functions the site will feature a collaborative online support platform for patients and caregivers. The Facebook-like home page will also track appointments, give out reminders, allow patients to share their problems or symptoms and doctors to monitor patients remotely. Information will be tailored towards each patient to facilitate a more informed decision. The system is designed to be integrated into online health records, retrieving and updating relevant patient’s information.

Actors in the healthcare field are starting to acknowledge the unique opportunity social networks offer for interacting with patients and leveraging information to improve access to and quality of care. Physicians are adopting patient social networs to monitor patients’ health and behavior online. Pharmaceutical, medical device companies, hospitals and other stakeholders use social networks to enhance their promotional activities and patient experience with the organization, and government agencies such as FDA and CDC to engage with the public during product recalls and pandemic preparations. Commercial value, success and return on investment of patient networks, however, are difficult to measure, and concerns about privacy and liability still hold back their widespread adoption.

The trend of patients deepening their engagement with the online world will continue to accelerate driven by the human instinct to share information and the growing Internet scale. While the Internet may be no substitute for professional healthcare, social networks raise health knowledge and awareness of condition, promote self-care and self-effectiveness, and lead to better health outcomes and ultimately cost savings.